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Patient Journey - Judy Joo

Patient Journey - Judy Joo

Endometriosis 2023:
Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC


Hello, Judy, it is wonderful to have you here today.

Hi. Thank you so much for having me.

You're so accomplished. You have such an amazing backstory, which I can't wait to get into. From Wall Street to Iron Chef to restaurateur head chef, really breaking all kinds of boundaries. But in your private life, um, you yourself were, were struggling with, with endometriosis. Um, I myself have endometriosis, one in 10, probably more actually in the United States, born with a uterus struggle with endometriosis. So thank you for bravely sharing your story.

Thank you. Yeah, I do think it's more than one in 10 cause I believe that so many people out there, so some of so many women out there are just not being diagnosed. They just think that they have very painful periods and you really can't diagnose this unless you see it. So it's, it's, it's hard to diagnose, um, from just a normal, uh, pap smear or routine gynecological exam.

So accurate. And I know for myself, I was 11 years old when I got my first period and I didn't know clearly what a period was supposed to be like or feel like or what was normal or abnormal. Mm-hmm. <affirmative>. Um, and for you, did you have an early onset of symptoms or, or struggles with your menstrual cycle?

Um, I did. And, uh, I, I had always had, um, fibroids, so it was hard for my doctors to distinguish what was actually pain from my fibroids and what was pain from endometriosis. And so when you have two of those things going on at the same time, you know, the fibroids obviously caused very heavy periods, very, very painful periods also. And when I was getting one of my fibroids removed, that was kind of when, um, my first doctor said, actually, and by the way, you have endometriosis also cuz he saw it. So, um, I, I had always just been diagnosed as having fibroids. I had no idea what endometriosis was until, um, I was having a surgery to, to remove some of those fibroids. And he is like, oh, there, there it is. Yeah.

Did you feel, when you got that diagnosis, were you aware of what endometriosis even was? Or did you have to look into it?

Oh, I absolutely looked into it. I had no idea. Um, you know, I, I just, um, thought that it would just give me very painful periods. I had no idea that this thing could like, spread and fuse all your organs together and, and everything. And my doctor, um, in the UK didn't really know that much about it either, actually. And, um, it, you know, I was just kind of living a relatively normal life. Um, I have to say I was very lucky and, um, rather asymptomatic, although I did have very painful periods. Um, but it was nothing that, you know, like a few Advils wouldn't, you know, solve for, for me. I never stayed home from, from work. I was never immobile. Um, so I was just, and, and you know, my doctors always say I have a high threshold for pain, but I mean, like, I could feel pain, but I guess I, I'm so driven that I was just like, I just have to get on with my day.

You know? But, um, you know, I did the whole thing of like, you know, having to make sure that like, I changed my pad and my tampon like every 45 minutes cuz I would just like bleed through to like chairs and everything. I was constantly emmic and, you know, I, I was just, I mean, it was like a murder scene practically <laugh>. If, if I, if I didn't like, you know, keep on top of it and stuff, just like, um, I was like, I am dying <laugh>. Like there's so much blood coming outta me. But, um, yeah. You know. Yeah.

And that, and I think it's interesting because I look back at my childhood and being in middle school and high school and having the same experience, I remember very vividly of bleeding through and, and getting up to go to the restroom. And this really sweet girl behind me is like, whoa, sit down, let, and she gave me her windbreaker to tire on your waist to go to the nurse's office. And it was like a normal thing to go to the nurse's office and have to have your mom pick you up to let you go home to shower to change your clothes. And never once was the nurse like, this is kind of weird, you know, like this Exactly. Little too much. Um, I know I never heard the term for all of my gynecologist visits, um, as a teenager on endometriosis until I was 32. So in so many ways is unfortunate as it is to have the diagnosis of endometriosis and fibroids, the dual diagnosis. You what age were you when you got, you finally got the endo diagnosis?

Oh, I was, I was probably, um, around 40 or like 38, 40 years old. Yeah. I had no idea. And um, you know, and I'm very proactive with my healthcare, you know, it was just so always, oh, you have fibroids. You have fibroids. And my mother had fibroids, so I just kind of acc accepted that, you know, um, had ha had no idea. And, you know, it was really, um, my, my gynecologist, you know, in the UK didn't really have much knowledge about it. Like, like I said before. And, you know, he was just like, okay, well it's fine, you know, um, if you are not in too much pain and you know, you can just take some anti-inflammatories and live with it, you know. And it was really, um, my ca 1 25 levels that shot through the roof that drove me to surgery. So, um, I didn't even know, but he had been, you know, giving me blood tests and looking at my CA 1 25 s and you know, lo and behold, like one time I, I, I did my tests and they were like in the 500 s or something and they're supposed to be under 35, you know, <laugh>.

And so he's like, you need to deal with this endometriosis cuz it's gonna lead to, to to cancer. And, um, and he is one of the best, um, gynecologists in, in the uk and he was like, we can't deal with this here in the uk. He's like, if you've got insurance in the United States, go to the United States. Wow. And, and they were just like, yeah, we don't know what it is. We don't deal with it. Like we can't have, you know, we're starting to, but he is like, just, just go to America, like they'll deal with you much better. And so that's how I found Dr. Sukin. Yeah,

That's, um, that's interesting too that the CA 1 25 was indicative of endometriosis because like you said, that's, that's usually a test to see if you have any sort of cancer cells or, or Right. Precancer for those that don't know, to know that those can correlate is, is interesting for anyone out there who might be able to get a simple lab test if they think there's something going on.

Yeah, definitely. I mean, it stands for Cancer Antigen. That's why it's called a CA 1 25. So, um, it is kind of a car a scary thing. It doesn't necessarily mean that you have cancer, it is just an indication of, um, that cancer is possibly reoccurring or, um, it's c it's C come back or, or it, it'll lead to it p potentially. It doesn't mean that you have cancer. It is, it is just, um, one of the, uh, the, the tests they used to, to monitor. Mm-hmm. So, um, you know, my cies were like through the roof. Um, and you know, I was a little bit, um, kind of di disappointed that I didn't know more about endometriosis before because if I had done something about it five years prior to when I first learned I had it, I probably wouldn't have been in such a bad state when I finally did get my surgery five years later because it's just gross inside of you.

You know, like it gets worse and worse and worse, worse. And, um, you know, I had stage five I think at like, like frozen pelvis, like the worst ass absolutely worst, worst form in case of e endometriosis. But, um, you know, Dr. Sukin and my doctors in New York were really surprised, um, by my M R I and matching it up to me as, as a person and the lifestyle that I lived. Cause I was really active, you know, like I remember like the week before I saw Dr. Dr. Sukin, I was like hiking and, you know, like sailing and all these things that I, you know, I li I lived a very, very active life. I was exercising a ton and he's like, usually people who have this type of M r I cannot move. They're, you know, paralyzed in pain and, you know, and then I was on the table for a regular gynecological exam and he was examining me.

He's like, you have no pain with this. I'm like, no, I'm fine. And he's like, usually women who have your type of M R I scan would can't even get gynecological. Yeah. They'll jump off the table. Like, like they could just can't handle it. And um, so like, they actually even called my doctors in London cuz they didn't believe me. Like, they're like, well, is she really doing all these things? Is she really going to work every day? Is she really, you know, working out this active skiing, hiking, you know, like scuba diving, all this stuff, like, like you name it, I, I I'm doing it and I

Wonder, I wonder if it was, you know, high pain thresholds and also like, were the nerve endings not involved? I mean, it's just so interesting how each person's colors differently. Right.

It's, I mean, yeah, I think everybody's biology is different. I mean, I definitely feel pain, like, I'm not like one of these like people, but what I have to say is I really think it's because I naturally eat an anti-inflammatory diet all the time. Like, these are just the foods that I gravitate towards, you know, and I don't drink a lot at all, you know, um, like of course I, I enjoy, I drink every now and then, but I don't drink daily at all. Mm-hmm. <affirmative>, I don't eat a lot of sugar and I never really eat processed foods, you know, so being a chef, I, I'm cooking a lot of fresh foods. I'm making, you know, I love vegetables just like naturally, like, and I don't eat a lot of red meat just naturally. I just don't gravitate towards it, you know, I'd much rather have fish. I'm such a big fit fish eater and sushi eater and all these things. And so I really attribute it to not having as many flareups as I did to the type of diet that I, I I, I'm still on today. It's just, it's just a, a way of eating. I don't even wanna call it a diet, you know?

Yeah. No, I think it's, I think it's important. I remember the first thing that I've heard, I heard about when I was googling endo upon being diagnosed, like one of the first things was endo endometriosis, anti-inflammatory diet. And I was like, what is this? And I was completely opposite as you. I was eating fast food, I was eating, I was in media, you know, and I'm in media, so I would, I hosted a radio show and I did tv and it was always like eating out of a vending machine. It was disgusting. Oh

Gosh. Yeah.

But like eating out food from the fast food in <laugh>, you know, Rockefeller like concourse, it was, it's gross when I look back. Yeah. And I think, of course I had swollen joints and everything going on because I was eating quickly. I wasn't sitting down, I wasn't really planning accordingly, but I know with myself, endo and diet has a lot to do with how I feel. Like I just ate poorly a couple days ago. I'm all swollen in the knuckles. It's bloated. It's not good. I know my body really doesn't do well. Um, and so many people ascribe to anti-inflammatory diet for you it's always been your normal routine or was it something that you kind of figured out that your body was best operating when you ingested those kinds of foods? Like, I

Mean, I think it's something that I kind of grew into, cuz of course in college I was just like eating pizza and like <laugh>, instant ramen noodles all the time. <laugh>. But I didn't really have, um, I don't think I had an endometriosis back then. And plus when you're in your twenties, I think you can kind of just eat everything and it doesn't really matter. Mm-hmm. <affirmative>. Um, but, um, as I, as I grew older and I, I, um, I don't know, it's just like, like my taste buds just, just changed. You know, I, I cannot stand the taste of like, and of like fake ice cream, you know, like fake vanilla ice cream. Like anything chemically, I'm just like, oh my God, gross. Like anything with that fake butter, you know, I'm just like gross, you know, I can't, I just can't handle, like, I, I can taste like the chemicals, I can taste preservatives, all, all of that stuff.

And so I feel that just eating, um, fresh over time, I just prefer it so much more. Um, and I love vegetables, I love green leaf, leafy vegetables and um, you know, don't get me wrong, like occasionally like I love potato chips or, or, or something, you know. So it's, it's, it's all about balance. But, um, I think that, uh, just, I, I just kind of grew into it, but also just being a chef and knowing about food and educating myself about food, um, I began to see how, um, much is in our food that we don't need, you know? Um, particularly, you know, once you start cooking and you work in restaurants, you just see how much butter, you know, restaurants use and, and how much like fat and like, you know, salt and cheese and, and, and whatever goes into things, you know? Um, and it just makes you think twice about wanting to put that into your body. Yeah.

For someone who might have been more like me Yes. And has endometriosis or an inflammatory illness who's wanting to be more like you in terms of diet <laugh>, how do they, how do they look at their kitchen and go, okay, what do I need as the starter pack here? What can I do at home that's easy to transition to a healthier lifestyle?

Well, I think, um, you gotta start small just like little wins because I think, um, I don't believe in elimination diets for, okay, first of all, I think that you, you need fats, you need carbs, you need the good kind of carbs, the good kind of fats, you know? So like, you shouldn't just cut out entire food groups. I just think that that's unhealthy and li and, and ultimately, um, just, just not sustainable in terms of a lifestyle, you know? But one thing that, that you can do that I think is, is very easy is, um, is take out empty calories. You know, so don't drink soda. If you're a soda drinker, you know, that can of Coke or Pepsi or something, even like these artificial sweeteners, be very cautious of them cuz a lot of these are not good for you, you know, like that they equals the CVS of the world.

Like they're new information is coming out all the time and they actually make you crave sweet things over time. You develop a sweet tooth and you want eat sweet things more and more. It, they've become addictive. You become addicted to the, to wanting to have something sweet in, in your mouth. And, um, so things like, like sodas, things that, um, like white foods a lot. Not, not all white foods, you know, but like white rice, white bread, white pasta. Things that don't really provide any type of nutritional value. Just stay away from if, if you're eating, think of everything that you put in your mouth as going towards making yourself feel better and give yourself fuel. Food is medicine and food is energy. It makes you think better. It gives you energy, it makes you, you know, get through the day everything. So you don't wanna just give yourself empty things, you know, you wanna make sure that there are nutrients behind it.

So, um, just take a look at everything that you're putting in, like small little things also, you know, like do you really need that tablespoon of sugar in your coffee? Can you substitute it maybe with some minuka honey, you know, if, if you do want to have something sweet, um, yogurt, just buy plain Greek yogurt. Don't buy the yogurt that has a fruit mix in cuz that's full of sugar. Put in fresh fruit on your own, you know, and I'm not saying that this takes a lot of time either just buy some punts and mm-hmm. <affirmative> put it in, you know, so these, these, these little things can, can make a big difference

In terms of coffee <laugh>. Uh, that's, it's so, I mean, it's always been part of, of the mainstream staple of adult Americans, unless you were a, a child that had no rules. Um, <laugh> Yeah. Um, is co I mean, coffee has been part of the anti-inflammatory diet as, as n it, um,

It can be. Yep. Yeah, definitely. There, there are a lot of, um, coffee alternatives also, you know, like there are a lot of teas that kind of like mimic coffee as, as well like, like cafe dozo, which is an Italian thing. I think there's some other like teas that, that, that mimic coffee. Um, I have no problem with coffee and a little bit of caffeine and I never noticed that it was linked to, um, flareups or, or anything that I had, but I would only have one cup, like, just not like a grande, you know what I mean? Just like one cup, you know? So it's, it's always imbalance and everybody's body is different, you know, we saw that very much with the Covid 19 pandemic. Some people have no symptoms at all and some people are practically, you know Yeah. Paralyzed by it or, or, or died, you know, so everybody's react is, is reacting differently.

So pay attention to your own body, you know, a lot of this has to do with, um, the way that we digest also, you know, your gut biome. Um, me being Asian and, and you being a different at ancestries, like what I can digest without my insulin levels spiking up is very different because like, I'm Asian, I can, I can eat rice all the way, you know, like every day, any day, you know. But like bread doesn't really sit too old me, or, or pasta, you know, um, my, my, my, my ex-boyfriend, like he was Irish. He could eat white potatoes and bread every day, you know what I mean? So, and this elevens wouldn't do anything. So pay attention to what works for your body and what you can digest well and you know, um, I don't think that it's across the board that, you know, this is, is good and this is bad. Like I think certain people can tolerate some things better than others. Yes. Um, but sugar I think across the board is not good for you <laugh> and particularly processed sugar. Um, you know, so there's certain rules that I think that you can follow processed foods in general also, like our body doesn't know how to digest all of these chemicals, you know? So generally if you look at the ingredients and you have no idea what they are or you know how to pronounce them better, to stay away from it.

Yeah. And it's, it's, so many people think that eating clean is hard cuz it requires prep ahead of time. You need to go to the grocery store or use a, a food service and pick the foods ahead of time so you have them because it's so easy to do the processed food diet of just grabbing something along the way versus, like you said, having the Greek plain yogurt and having the fresh fruit at your house. Because I know when I have those things accessible, I prefer to use that anyway. Mm-hmm. <affirmative>. Um, and also going back about figuring out what your body responds to. What do you think about food journals as you start? You're

Oh, I think, I think that they're great, you know, f food journals, um, not only does it make you think twice about what you put in your mouth, but it, it gives you a clear, um, thought process because you think about what you're doing because usually we just eat blindly, you know, you just eat and you feel funny later, but you don't associate the the two together. So I think food journals are absolutely brilliant.

Yeah. That's, um, that's something that every doctor has, has mentioned that that is something definitely we do

Personally. I, yeah. And I feel a lot of us, you know, we are out of touch, um, with the way that our bodies react, you know, and we're out of touch of what exactly is a symptom, you know, like it, and we, we kind of just try to power through pain or power through a cough or, um, you know, any type of symptom. If it doesn't bother us too much, like, like it's just like, oh, it'll go away, but actually our body is trying to tell us something, you know? So we have to think of it as every type of symptom as a message from our body saying, Hey, I didn't like this that much. You know what I mean? It's as if you, I mean you have to think of your body as your house and it really is, it's the only place that you have to live, you know, <laugh>.

And so in your home, would you ignore a leak? Would you ignore a light bulb that go, that goes out? Would you ignore a squeaky door or a leaking faucet? You know, anything like, like a a, a broken window. Mm-hmm. A crack something you wouldn't, you know, so these are all things that you can kind of like use as an analogy for your body. You know, like, am I breaking out? Do I have rash? Do I have sore knuckles? Do I have gas? Am I bloated, do I feel nauseous? You know, all of these things, um, are, are my nails brittle? Like all these things are your body giving you a message that something isn't quite right. Yeah,

No, that's, that's an excellent, I I've never heard it said that way before. And I think that will resonate with a lot of people because the body is our greatest indicator of what's going on. So it's connecting your brain and your body and seeing it as a sign to maybe go get, you know, a doctor to check some things out. Oh,

Definitely. And I really suggest that, um, that because so much is linked to your gut biome, you know, if, if your gut biome is healthy, like it, you know, like it boosts your immunity, everything is, is linked to your gut biome, just maybe just go for like blood tests and do a stool test and just make sure that you're digesting everything properly. You don't have leaky gut or anything. And that, um, you know, just kind of start from like a ground zero that you know that. Okay. So from here on going forward, I know that my gut biome on my flora, my fauna and everything's down there is good because, you know, I I I ended up, um, being diagnosed as assp with SIBO not that long ago, which is, um, small intestinal bacteria overgrowth. And um, so I, I was just, I just thought it was bloated, you know, I had no idea that actually, cuz I had a, I had about a food poisoning and a food poisoning can cause like an imbalance in your gut and it just took forever to get back on track. And um, you know, it's, it's just, it's just a good thing every now and then to to just have your gut checked out entirely.

Yeah. Like your gut's telling you check your gut, check it <laugh>. Exactly. But also with, but with endometriosis too, there is that there's a high correlation of sibo and I've, many people that one here have said that they, they have it and Dr. Sukin has always laughed off that anyone is with endo is told they have ibs, he said is bs. Yeah. Um, to not believe that, to go deeper to look into it because usually if there's something going on that it's, it's not just, oh, it's I b s deal with it, let it go. Like you said, go address the problem. If there's a leak, you're gonna go fix it. So don't just let that go. Awesome. For, um, for you, you, you've gone through so much over so much time, but, but now having a diagnosis, um, later like myself later in life, um, what would be one takeaway that you would like to pass on to those that have endometriosis from your journey

When you Yeah, I would say deal with it sooner opposed to later because it's just growing inside you and it just gets worse and worse. I ended up having an eight hour surgery, you know, and I was in the hospital for like four nights, you know, so mine was a very extreme case, but if I had dealt with mine five years earlier, I probably wouldn't have had to have such a serious surgery. So, um, deal with it sooner opposed to later. It's easier to fix The smaller it is, the smaller the problem. Um, I would get a full body checkout and most, um, regular doctors may not do this. You might have to try to find, um, a functional medical doctor or integrative medical doctor who, you know, will look at all your blood work, look at all your urine work, you know, look at a, like do a stool test and just like check everything to make sure that everything else is, is working.

You know, check, check your insulin levels, check your gut biome, check your hormonal levels, you know, like everything. Um, and, and just make sure that there's no other underlying causes that are contributing or making your endometriosis worse. I, I would say as well and, um, and remind yourself that living in pain is not normal, you know, so I think that so much of this of, with so many of us with endometriosis, um, go, go through gaslighting like, oh it's fine. You know, like, oh, you should just deal with it, you know, it is not normal to bleed through a pad, a tampon and your jeans into a <laugh> di a restaurant chair. You know, he like that is not normal <laugh>. Ok. You know, like being like, I used to like, I remember like walking down the street and having a cramp and I'd just have to stop cuz like, it was so painful and like, hang on to like a street lamppost or something, you know, cuz I was like, like my, my cramps would sometimes bring tears to my eyes. I was like, this is not normal, you know? Um, becoming anemic from your periods, you know, that's not necessarily normal either. So deal with it, deal with it quickly and, and do your research and find some good doctors. And I do think that it's important to attack it from both sides. So both from the medical side as well as from the functional medical s me medical side. Like, you do need real medicine, but I think food is medicine too, so maybe supplements what, what you're eating, diet, you know, f figure it all out. Yeah.

No, that's, that's excellent advice and I appreciate all your time today. We're excited to, to be having this episode and in honor of the patient day conference that's upcoming and, um, and an honor of March endo awareness month. So it is lovely to have you and fantastic insights really. I, I love this new connection because there is so much to it.

Definitely. And, uh, good luck everybody out there. Thank you for listening. And, um, we are all endo warriors and you will get through it because it's completely manageable disease and I've not had a flare up since my surgery, so, and I've not had any c complications. So, um, you're in good hands, um, with your doctors and it's better to have, um, to go through a surgery than to live in, in pain for the rest of your life.